Quotes from the heart by parents
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25 May 2013
at Tweedbank Community Centre
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Help us to continue our important work with families who have children with additional needs.
We have members with recognised disorders – Autism, ADHD and Downs Syndrome. We also have members with rare conditions – Charge Syndrome, and we have members with no diagnosis.
We have no criteria for membership of our group. We are open to all parts of the community. Our meetings and activities are for the whole family unit, parents, carers, siblings, and grandparents as a special need has an impact on the whole family.
We have members with recognised disorders – Autism, ADHD and Downs Syndrome. We also have members with rare conditions – Charge Syndrome, MMA - a metabolic disorder, and members with no diagnosis.
When you have a rare disorder there may not be a support group in your area, you may have to travel miles for help.
One of our members has a rare metabolic disorder and the nearest family with the same disorder is in Ireland. If you have no diagnosis, there is no group.
B.A.N.G enables us to meet somewhere where we all fit in, there are no prejudices within our group, we can take our children to a relaxed meeting space, without being stared at. We meet once a month for a coffee and chat or an activity or day out.
My daughter has Down’s Syndrome and had accompanying heart problems, she was given a 1 in 4 chance of surviving the surgery she needed. I had to be strong as every day was a battle to keep her alive.
She was fed with a nasal gastric tube until she was 18 months and I felt all people saw was her tube or her Downs.
I needed someone who had been there and done that, who could say, “yes, I know how you feel”, I found that at B.A.N.G.
It is so hard for someone without a special needs child to understand how a parent feels. I’m told, “they’re all so loving”, but Lucy has Downs Syndrome, she is NOT Downs Syndrome, she is a person first and foremost and the Syndrome is second to who she is.
Deborah and Stuart Grieves' child Paula, suffers from an unknown condition. She is deaf, unable to speak or walk and is fed through a tube in her stomach during the night to help her gain weight.
Paula, who communicates using sign language, has yet to be diagnosed by doctors who can only determine that she "failed to thrive" from birth.
Without B.A.N.G's help Deborah & Stuart wouldn't have found out about funding that is available for families of children with additional needs.
"Before we got involved with BANG, we had no information and there was no support, largely because Paula wasn"t diagnosed and didn't fit under any specific label.
Now, I get to meet other mothers who have experienced similar problems and we talk and can exchange information and without their help, I wouldn't have found out about the Children's Family Fund."